Saturday, July 25, 2009

Because I swear, my family must think at least one of these things of me.

My grandma is in town with her sister. Tonight, the two of them, my dad, David, Robbie and I went to dinner. It was right at Robbie's dinner time, so I packed up the feeding pump and toted it with us. Usually if we're going out, I bolus feed him half at a time an hour apart, but he's been particularly pukey the last few days, so I was trying to take it as easy on him as I could. So I used the pump. That means there is a tube connected to him hanging and connected to a bag containing his pump and milk. My point is- it's pretty obvious.

We've firmly established that Robbie does not eat. Maybe 2 or 3 baby spoons of solids per day- if we're having a good day.

Then can someone tell me why everyone keeps trying to feed him?

Grandma asks if I want one of her carrots for him. Me: no thank you.G: You sure? me: He won't eat it, grandma. G: you don't think so? me: nope. G: even if I mash it up?me: He doesn't eat ANYTHING, grandma. G: Oh. *looks disapproving*

Five minutes later

My dad: Want some of these mashed potatoes for him me: no thanks Dad: you sure?me: No thank you, he's fine.Dad: just offering. me: I know. He's fine. He's being fed right now. He's okay. Dad: well, if you wanted some..me: HE'S FINE. I SWEAR HE ISN'T STARVING. He is being fed right now. If we overfill his belly, he will puke. If I give him something and he gags a little, he'll puke. He's FINE.

Right at the end of dinner, Robbie started puking. Not surprising. He was wiggling around, leaning forward and playing while a feeding went in. So he heaved a few times. David and I cleaned up the puddles and wiped Robbie down. Robbie was fairly unaffected. He sort of cried out just before he heaved, but as soon as the offending milk was up, he was back to playing again. He pukes every single day of his life. He's very sadly used to it.

As we left, my aunt made a comment about Robbie "looking so sick." I said he wasn't sick. "He does this every day." She exclaimed, "OH!? REALLY?" Apparently I've been talking to walls when I tell them HE PUKES ALL THE TIME.

There were other little things. And it's constant. Every time Robbie makes so much as a squeak, my dad makes a joke. "See! He wants pepperoni pizza." "See, he wants some chicken wings." I know he's just trying to be funny, but it gets old. Yes, I'm sensitive about the food issue. I WISH he wanted a pepperoni pizza. If he'd eat it, believe me, I'd feed it to him.

Literally, if he gets a bread crumb to the back of his throat, he gags until he pukes. Stage 3 baby food? Same thing. The other day I tried to give him some turkey that was mashed a little too thickly- the minute it touched his tongue, he started gagging. He has texture issues.

For heaven's sake, we CUT A HOLE INTO HIS STOMACH AND PUT A TUBE THROUGH IT SO HE WOULDN'T STARVE TO DEATH. It was not an elective surgery. He has an EATING DISORDER.

They act like we just haven't found the right foods to feed him. If only I'd offer him a magic carrot, or pizza, or bananas or juice or whatever the thing is they're pushing this week, he'd be fine. Robbie doesn't have a problem. His mom is just too clueless to feed him properly.

Last night we went to Dai.ry Q.ueen for dinner. Someone mentioned getting ice cream. I said I couldn't have any because it's made with corn syrup. My dad says very excitedly "Robbie can have some!" Umm, no dad, actually he can't. Dad is insulted. "Why not?!" I explain that the reason I can't have the ice cream is because Robbie's reflux goes crazy when I have corn syrup in MY diet. Nevermind Robbie eating it directly.

"Oooooooooh." He accepts.

I didn't even get into the fact that Robbie wouldn't want it. HE DOESN'T LIKE FOOD.

Someday he will. I know this. While I don't like the situation as it stands, it's our life and I have to accept it. It will change someday in the future-probably a few years down the road. But for now, can we issue a cease and desist on the food pressure? I promise I'm not starving him on purpose. And I'm not too lazy to feed him. I try. I swear.

22 comments:

You know, some people just DON'T GET IT. And when they don't get it, you just have to not take it personally, because they just don't know what they are talking about. When you are immersed in this world of issue x, y, or z, it becomes SO familiar you know all the facts and details like the back of your hand, but the uninitiated just. don't. get. it.

Before James was diagnosed with reflux, my mom thought I was just over-reacting when I told her that he was extremely colicy, and that he cried for up to 12 hours a day straight. Ironically, giving him medication for it really legitimized the condition for them, and a letting them babysit every Wednesday REALLY drove the point home (nothing like a baby who cries all night long to prove a point with).

When I told my parents that I have celiac disease, and PCOS, and diabetes, and fibromyaligia, she thought I was crazy and making it up. It has taken 2 years for my parents to accept that yes, I actually DO have celiac disease, and that my mom and sister probably do to. And the only thing that changed their mind is that they did research for themselves on the internet. The more they knew about it, the more they accepted it.

it's totally understandable to get frustrated with people who don't get it. i'm already facing family and friend stress, and ignorant questions... wren is only 34 weeks! i'll use your advice if you figure out how to deal with it.

19 is pretty much the nicest number I can think of right now. He is doing so well. Why? Because his mother knows him, knows how to feed him, knows what he needs and listens to what her son tells her. You want me to talk to them? Because I would. I am so sorry they don't listen to you and aren't more sensitive to how difficult this has been. The only thing I can think is that they are trying, in their own misguided way, to treat him like a normal child of his age, but the fact is, he's been through a lot. You all have. He's doing phenomenally well and I count him a miracle that I have been blessed to witness. I wish they would recognize that too. He's beautiful, Trish. Beautiful and growing and loved and so carefully cared for. Whatever thoughtless comments your family might make, remember that God is so so proud of you and He knows that you are capable, He never would have trusted you with the wonder that is Robbie if you weren't. Much love.

yea for 19 pounds!!I have you all in my thoughts and prayers. Your little boy is just sooo cute!! And if it makes you feel any better, every one thinks they know what is best for the baby....they push and push and dont really listen to the mom, even though she really knows best. Keep up the great work and we all know you have Robbies best interest at heart.

OMG! Trish I can't believe how big he is now. That's so fantastic. We also experience the invasion of the food pushers. DD, Savannah, has a milk allergy a very severe one. I swear everytime we eat with people someone suggests giving her ice cream so she will 'get over it.' We're now afraid to leave her with anyone. It really sucks, and I'm sorry!

19 pounds is awesome! Oh and my in-laws do the SAME thing and it annoys me even though he eats just fine. They don't seem to understand that he is eating the food he is supposed to be eating for his age. He's 2 months premature! They think he is like 2 years old or something. They actually try giving him whole watermelon and whole cucumbers! And they will take him out of my arms and literally shove food in his face while I'm telling them in no uncertain terms that he is not to eat that because he could choke or have an allergic reaction (they've actually given him adult desserts and things with all sorts of ingredients he's never had before).

I'm feeding him milk and his baby food (stages 1, 2 & 3), but apparently I'm starving him! The worst part is they even say it while they're holding him. "Is mommy starving you?" I want to punch them in the head. So I get your rage, though it must be much worse because Robbie has an eating disorder. I wish other people would realize that WE are our kids parents! We know what's best for them!

I know it has to be hard. But you are doing everything right. You are a good mom, actually you are a GREAT mom. I am sorry your family isn't being sensitive to the eating issue. That's why this is here, and we are here. To listen.

We didn't have many feeding issues with Anthony, well reflux but that went away once he was on solids thankfully. but i can understand the frustration. Anthony was on oxygen for 8 months. And we were on strict house arrest because of how sick he was. I had family and friends bugging me all the time saying "well he's not sick anymore" and why aren't we taking him out! Ummmm HELLO? Do you not see the oxygen on his face? Do you not see the oxygen tank I have strapped on my back when ever I DO have to go some where? (dr appointment). People just did not understand that if Anthony got even the tiniest cold he could of died on me! He still had 3 holes in his heart at that time, and very bad lungs!

You are Robbie's mommy! And you are awesome because you put Robbie's needs infront of other peoples! Some parents give in to the peer pressure and its just not proactive for their children. I always told myself, A couple years of hard work and sacrifices will set my son up for a healthier, and happier future! And to look at how healthy and happy he is now makes every second of fear, house arrest and hundreds of dr appointments worth it!

Congratulations on the 19lbs! I'm so sorry that you're getting that kind of pressure. I dread hearing people making suggestions about why the boys don't eat and how to get them to eat. Hang in there. It's going to happen.

This just makes me mad. I really hope that in time they come to appreciate everything you have done for Robbie and to have even the slightest sense of what it means for a baby who has gone through everything Robbie has to refuse food.

Wow. I don't know how you dealt with that, Trish. I think I'd have cracked. People just don't understand things until they live it. They think they're being helpful or cute, but it just irritates the bejesus out of you. Hang in there!

Wow. Just wow. I can NOT believe how insensitive that all is. ((HUGE HUG)) I'm so sorry hon.You have so much more patience than I ever would... I really admire you for that. Feel free to rant away any time!